Enhancing Information Management for Young Adults After Genetic Cancer Risk Testing
Nest Genomics
Summary
The goal of this clinical trial is to see if a software platform can improve cancer screening in young adults with genetic risk for cancer. The trial will also help improve the software platform (Nest). The main questions it aims to answer are: * Do Nest users know more about their cancer risks and recommended care than non-users? * Do Nest users have less psychological distress than non-users? * Do Nest users share cancer risks with family and other doctors more than non-users? * Are Nest users more likely than non-users to have up-to-date care plans? Researchers will compare Nest users to non-users to see if the Nest users are more likely to do recommended cancer screening. Participants will: * Have a genetic counseling or follow up visit * Take a post-visit survey * Intervention arm only: use the Nest Patient Navigator * Complete screening and follow-up care recommended by doctors
Description
The overall objective of this project is to refine and study Nest, a software platform that integrates genetic data into patient care, with a goal of improving adherence to recommended care and empowering patients and clinicians to utilize genetic information longitudinally. Nest stores structured genetic results in the electronic medical record (EMR) and provides an interface for clinicians to order guidelines-based, personalized care plans with automated charting. For patients, the mobile friendly platform serves as a secure tool to store results, understand risks and recommended care, adher…
Eligibility
- Age range
- 18–49 years
- Sex
- All
- Healthy volunteers
- No
Inclusion Criteria: * Ages 18-49 years, inclusive * previous cancer genetic testing with a finding of a pathogenic or likely pathogenic variant resulting in an increased risk of cancer warranting clinical management. * English-speaking and -reading * Receiving care at Dana Farber Cancer Institute * Not in active cancer therapy at the time of approach Exclusion Criteria: * Age \<18 or \>49 years * Has not had genetic testing for hereditary cancer syndromes or has been tested but no pathogenic or likely pathogenic variant was identified. * Non-English speaking and reading * Not receiving care…
Interventions
- DeviceNest, an electronic medical record (EMR)-integrated software platform to deliver longitudinal, genetics-based care at scale.
The Nest software platform includes the Nest Care Studio, Nest Patient Navigator and the Analytics Dashboard. Nest Care Studio is a clinician facing portal that can be used standalone or electronic medical record (EMR) integrated. Care Studio enables clinicians to effectively manage patients' genetic information over time. Clinicians can see a list of patients that meet criteria for testing, run risk assessment calculations, order genetic tests, manage patients based on results and view education modules.The Nest Patient Navigator is a secure mobile device accessible platform that provides a centralized location for patients to store, manage, and follow-up with their genetic results. The Analytics Dashboard is an interactive dashboard that can track outcomes of genomic programs and trigger interventions to optimize them.
Location
- Dana Farber Cancer InstituteBoston, Massachusetts